Thursday, September 29, 2011

Back to Where It All Began: A Visit with Dr. Han

For those of you that have been following my story, you will remember that my leukemia (CML) diagnosis resulted during a routine checkup, following ovarian tumors that I had seven years ago. I continue to have regular checkups every six months and as of today, I am a bit overdue!

I briefly saw my doctor, the one that diagnosed me, when I was in the hospital in February. I have not seen him since. I am hoping that today’s visit will be uneventful and that no new issues will appear. Oddly enough, I have never been concerned when going to these appointments; I truly believe, that even though I had borderline ovarian tumors, and there is a chance that they will return (in a different location, of course) that they were removed and that is that. They are gone and will never return. I have never been concerned or worried. I thought that I “did” my big ticket item and that I was done. Ha! Jokes on me!! The irony of being diagnosed with leukemia during one of these visits is still boggling my mind.

Fast Forward: I saw my doctor yesterday and fortunately it was uneventful. Everything in “that” department looks A-OK. He told me that he is still astounded that I have leukemia and that in all of his years practicing medicine; he has never diagnosed a patient with a second cancer. He is a gynecological oncologist, so he sees and treats cancer patients every day. I almost think that he feels worse about my diagnosis than I do! He was just so shocked and empathetic; and the girls in his office, the same one that I have been seeing for years, just kept saying how blindsided and sorry they are; and how they just can’t stop talking about it. I’m not sure if that is a good thing or not. I believe that to them, I represent the reality that no one is invincible. We are all vulnerable and even the healthiest people can and do, get cancer. I am living proof of that.

When my ovarian tumors were discovered, also routinely, everyone thought that they would just turn out to be benign cysts. I was young(er), strong, healthy, ate well, exercised and did all of the “right” things. We were all quite surprised at just how sick I was. Fast forward seven years and I show up, for all intense and purposes, I looked, and was, healthy; a bit pale, but otherwise healthy. One blood test later and BAM; I am in the hospital with leukemia. So, I believe that to the girls in the office, as well as others, I represent the unexpected reality that your life can dramatically change at any given moment. No one is bulletproof.

Anyway, life goes on and I am happy to report that other than this stupid cancer; all is well in my world. 

Monday, September 26, 2011

Better than Christmas: Visiting My Kids and Grandkids!

It has been a long time coming; I finally am able to travel and visit my son, daughter in law, and four of my grandchildren. I was able to have the two older girls with me for a few days this summer, but I haven’t seen Brookie, since Christmas last year, and I only briefly got to see the brand new baby, born in May; once. I am so anxious to get to know that little boy. I am really hoping that he doesn't take one look at me and burst into tears!

Shockingly, enough everyone is actually healthy, with the exception of my son who randomly tested positive for mononucleosis, a few months ago; so, guess won’t be kissing him. Other than that all of the kids are well. I brought my meds, extra vitamins and precautionary breathing prescription, just in case, but I am hoping for an uneventful, healthy trip.

It is so hard to not have them right down the street, like they used to be when we all lived in Boise. They are now in the Phoenix area and I am in Los Angeles; it is just too far away. What happened to the days when families all lived in close proximity to one another? If I had my wish all of my children and grandchildren would live in their own homes, walking distance to Nana!

Friday, September 16, 2011

Medical Expenses of Leukemia: I Need Your Help!

I suppose that since it is National Leukemia and Lymphoma Month, now would be a great time for me to begin freaking out about my medical insurance that resets on January 1st of every year. Since I have been self-employed, in one form or another for most of my adult life, I have never had the good fortune of being included in the benefits of an employer’s health insurance plan. I have had to purchase my own health insurance, which I have done through Anthem Blue Cross, for the past thirty years. Fortunately, I have had the wither-all and means in which to do so, despite the high rates and low benefits that have been available to me.

I have always figured that some health insurance is better than no health insurance at all, and since I have always been in great health, a catastrophic insurance plan has always been a good choice for me. A catastrophic health insurance plan is literally just that. It does not pay for the small medical instances such as a sore throat, flu of urinary tract infection, but does cover larger instances such as appendectomy’s, or in my case, cancer. The biggest drawback is the extremely high, yearly out of pocket expense. Last year, needless to say, I met that expense in one fell swoop; when I was admitted to the hospital, after being diagnosed with leukemia. Normally, this would not be an issue; I would have been hospitalized, cured and sent home. I would have had to pay one, great big, out of pocket insurance deductible. I would have recovered, picked myself up, dusted myself off and gotten right back to work!

The issue arises from the fact that my type of leukemia is not curable, only manageable, which means, extremely high medical costs that reset on a yearly basis. I will need to come up with a $5000 deductible at the first of every year for the rest of my life. This in addition to the many other out of pocket expenses and extremely high cost of my medication, has kept me up many a night; worrying.

I have been very blessed with random and surprising donations, and am extremely grateful to all of you that have helped me in my fight thus far. I have never been very good at asking for help of any kind, but I am afraid that I have been humbled by leukemia. I have found a few writing gigs and some sewing and cakes that need making, but I am afraid that none of these are yet profitable enough, to keep my head (and body for that matter), above ground for long. I have found some really cute bracelets that are cancer/leukemia related and I am going to try and sell them as somewhat of a fund raiser. They range in price from $15.00 to $18.00. If you simply wish to donate, there is a place to do so in my right column. Desperate measures require desperate times. Of course, I am also willing to consider any and all other options or opportunities offered to me.

For those of you that can and do, my humblest thanks. For those of you in the same boat, or even one with more holes in the bottom of it, you have my emotional support and empathy. And to all of you that just read and support me through encouragement and kind words, please know that I am eternally grateful. 

To order, just click on link below the picture. Thanks!

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Tuesday, September 13, 2011

Signs and Symptoms of Leukemia: National Leukemia and Lymphoma Awareness Month

Our brains have a strange and very capable way of enabling us to cope with just about everything that is thrown our way. Looking back a month or two prior to being diagnosed with chronic myelogenous leukemia, I now am able to clearly see the signs that were right in front of me. Of course, my very capable brain was able to create a perfectly logical explanation for every one of my symptoms.

Probably one of the very first symptoms that I noticed, and disregarded, was my hugely swollen spleen. I remember lying in bed one night reading; I said to Joe, “You know, things just don’t seem to fit in here like they used to.” I just didn’t feel like I could get comfortable and that “things” were crowded on the left hand side of my abdomen; up under my left rib cage. It felt tight to the touch, but it also just felt thick, like muscle. It didn’t hurt and most of the time I didn’t even notice that it was there.

The second symptom that I noticed was probably the fact that I was just a bit more tired than usual. That symptom was easily discarded since Joe and I are always on the go. Our feet hit the floor running every morning and don’t stop until we go to bed. That coupled with the fact that I was soon to be 52, I just chalked being tired up to, doing too much and "old age"!

The third symptom was that I seemed to become a bit short of breath, when I danced. December was a very busy dance month for us as we were preparing to dance at the UCWDC World’s Championship in Nashville Tennessee, the first week of January. That year was the very first year that I had ever competed in anything in my life. We competed in the Pro/Am division and I was the Am. Dancing was something that I had wanted to do my entire life and I had finally begun to learn to dance a few years prior. Joe and I actually met when I took a class that he was teaching at a dance convention and now we are competing in the pro/am category.

So, back to my windedness; we compete in eight dances and while practicing our routines, it is typical to run through them one right after the other for an hour straight. I started running out of gas during practice several months before World’s.  When I was competing, I was wondering what the elevation of Nashville was, as I was a bit winded dancing there. I didn’t know if it was the elevation or my nerves, but I did notice that I was a bit short of breath after every dance. After competing at World’s, we took a short hiatus from practicing; when we resumed, I told Joe that it seemed weird how quickly I became winded. I had to stop between routines to catch my breath. I chalked that up to being out of shape, and for being a slacker for the past three weeks. Of course, now I know that it was a symptom of my leukemia. I did place eighth in my division at World’s; but I just know that if I hadn’t had leukemia, I would have come in first!! And no, there weren’t only eight in my division, there were twenty four competitors.

My fourth symptom was the bruising. Now I must preface this with the fact that I am very clumsy and am always bruised. I never remember where I got them; I just know that they are there. Looking back though, this bruising was different. The bruising on my body, just prior to being diagnosed with CML was a bit odd. I seemed to have more of them and they seemed to last longer. They were also hard to the touch; like a bulge under the skin. (This was from the overabundance of white blood cells.) They popped up with a slighter bump or bang than they used to. I noticed them and reprimanded myself to start being more careful. The odd thing about this symptom is that I KNOW that it is can be a sign of leukemia. When my daughter was only four years old, I took her to the doctor and insisted that he check her for leukemia because she was always covered with bruises. Yes, she was a tomboy and no, I didn’t beat her! It is amazing to me that I never correlated the bruising to leukemia within myself.

The fifth symptom was probably the headaches. I had been having headaches at the back of my head for quite some time. I chalked that up to needing my eye glass prescription updated and changed. The headaches seemed most prevalent at night, while watching TV or reading, or while working on the computer. In other words, while concentrating. Yes, I know, taxing on the brain! I made an appointment to go and see an optometrist on January 13, 2011. During my eye exam, while looking into my eyes with that very bright light, the doctor asked me three questions. “Do you have high blood pressure?” I answered, “No, I have low blood pressure.” “Do you have diabetes?” I answered again, “No, not that I know of.” “Are you anemic?” Once again I answered, “No, not that I am aware of,” “Why?” “You are frightening me, should I be scared?” He replied, “Well, you have a significant amount of blood in your eyes.” Of course, I freaked out a bit and asked him what it could mean. He said that he wasn’t sure, but assured me that I would not go blind, but also said that I should make an appointment to see a retina specialist within the next month or so.

Now you must remember that I have been dealing with Cipro poisoning for the past nine months. My immediate reaction was that this might also be Cipro related. I went directly to the pharmacist and told her what the eye doc had said and asked her what she thought. She agreed that it could very likely be Cirpo related as Cipro not only affects your muscles, joints and tendons; it can also affect your vascular system. That in combination with all of the Ibuprofen that I had been taking for the muscle pain, my vascular system could be compromised and my blood could be thin causing the eye bleeds. I left disgusted and prayed that it would not be Cipro related because if it was, there was nothing that could be done. Moral to that story, be careful what you wish for and be very specific when you are sending out prayers!

The sixth symptom was the night sweats. I had been having night sweats for approximately six weeks and would wake up damp and cold. I was constantly kicking the covers off and then pulling them back on, all night long. This of course I related to hormones. It was a no brainer and I would be talking to my doctor about it at my next appointment.

Number seven was the bite-like rash that I suddenly starting getting on my torso. You know that the first thing I did was wash my sheets and check the bed for bed bugs. I was convinced that we must have them and that I was just sweeter than Joe, because he didn’t have any of the bites! You guessed it, no bed bugs. I hadn’t changed detergent and I hadn’t been camping. My skin is still very sensitive and I really just want to run around naked all of the time as clothing drives me crazy. Let’s hope the phase passes!

The last and final symptom, and probably the one that would have eventually sent me to the doctor, was the extreme fullness I felt when I ate; and my funny blood. It was Super Bowl Sunday and I had a routine doctors’ appointment in two days. Joe and I were viciously trying to get our yard work done before the Super Bowl began.  I was mowing the front yard while he mowed the back. I remember finishing one side and looking at the other thinking, I just can’t do it! I was pooped and  had to force myself to finish mowing the lawn. I kept thinking what a baby I was being since I had mowed the front and back on previous occasions and never even been tired. I convinced myself to finish mowing and while doing so I pricked my arm on a rose thorn. It started to bleed and I ignored it. Joe had finished the back yard and had come to see how I was doing. I was through mowing and was putting the mower into the garage. Both of us looked at my blood and thought that it looked “weird.” We both said, “That doesn’t look right.” It was sort of an orange color, not really red. I still had not a clue; my brain and common sense in total denial.

Joe started the BBQ and I made a salad and veggies. We sat down to eat and within four bites I was stuffed. I thought that it was strange as I usually eat much more, but figured that my lunch was still with me. Being that Joe works for Anheuser-Busch, we of course had beer on ice. I found it odd that it took me practically an hour to drink just one beer. The Super Bowl was over and I was still miserably full. I wasn’t even able to go to bed until midnight because I felt like a stuffed pig. I was so miserable. Do you think that by now I would have a clue that something was terribly wrong? Looking back, I can hardly believe that I didn’t.

So, as a recap; my symptoms included fullness due to a swollen spleen, eye bleeds due to blocked and burst capillaries from an overabundance of white blood cells, shortness of breath, funny looking blood, tiredness, bruising, night sweats, a skin rash and frequent headaches. All of these I easily explained away and none of them interfered with my everyday life. Duh!

Monday, September 12, 2011

Save a Life, Be the Match: September is National Leukemia and Lymphoma Awareness Month

As the month of September brings leukemia and lymphoma to the forefront, it seems to be a great time to bring more awareness and understanding to these diseases. Last September it would never have occurred to me to even attempt to bring any sort of awareness to leukemia. Up until seven months ago, the only two health-related issues that I have ever tried to bring any awareness to were ovarian tumors; and the devastating side effects that can occur from a class of antibiotics called floroquinolones. (Cipro, Avelox and Levaquin) The reason for this is simple; I had previous personal experiences with them both. Now that I have leukemia, I find myself bringing awareness to blood and bone marrow cancers, too. It is funny how life has the ability to change your direction and to help remind you of what is and what is not important.

I understand how we, as human beings, often only relate to our own personal experiences and struggles. We can easily become self-absorbed in our own little worlds and often forget how we can make a huge difference in the life of someone else. Between our friends, family and careers, not to mention Angry Birds and Facebook, we all have so much on our plate that we often forget to stop and smell the roses. We often forget to be grateful for our blessings and don’t always realize just how quickly our lives’ can change. How quickly our blessings can change and become our challenges.

It is often change that wakes us up, slaps us in the face and makes us realize that we could have and should have done more; when we were able. I DID donate blood from the time I was seventeen, until I had ovarian tumors and they no longer wanted it. I often gave donations to others that were “running” for a cause, but could have done, and given more. Maybe next year, I will be up to running for my own cancer; Chronic Myelogenous Leukemia, and will be able to give back to the organizations that have helped me; namely Destination Access.  I always had the intention of becoming a bone marrow donor and joining “Be the Match,” but never did. Now it is too late, maybe it is a blessing in disguise.

For those of you that are able, please consider donating blood and joining “Be the Match.”  I do not need a bone marrow transplant at this time, but I have needed blood. There are still thousands of people; many, many of them children, just waiting for someone to be their match. You may have the power to literally save a life; literally.

 Since being diagnosed with leukemia seven months ago, I have seen so many sick children; all of them have helpless, desperate parents praying for someone to save their child. They are doing everything that they can and their very last hope is often a stranger; a stranger that may have the ability to save their child’s life. These are the most difficult patients that I have come in contact with.  As much as I wish I didn’t have leukemia, I feel so fortunate to have lived 52 years without it. The children with leukemia just break my heart.

I've come a long way in 7 months!
Just think how good you would feel knowing that you actually saved a persons’ life. That person is someone’s child, spouse, sister, brother, mother or father; that person matters to someone and your bone marrow may give them the opportunity to continue to matter; to continue to live.  I cannot think of a more gratifying way to give back to the universe, to give back to a fellow human being. 10,000 patients need a transplant; 5,000 receive one. Who knows, someday I may need one myself. I do not have an eligible sibling so I would have to hope and pray for someone, known or unknown to me to be my match.

I never know where my ramblings may go, and this was not the direction that I had intended on going, so I suppose it is now time to exit my soap box and attempt to express my original thought on National Leukemia and Lymphoma Month, later this week. Thank goodness it lasts and entire month; maybe by the end of the month, I will manage to pin point, my point, and to get my point across!

Friday, September 9, 2011

Seven Months Ago I Was Diagnosed With Leukemia (CML); Bitter or Bitter-Sweet?

It was seven months ago, today that I heard the words, “Michele, you need to go straight to the Emergency Room, I am sorry to have to tell you this, but you have leukemia.” I was out of town visiting my folks when I got the news. I used to live in the Palm Springs area so I was familiar with Desert Hospital, my son was born there and I had had surgery, for ovarian tumors, seven years prior there, as well. I would have been “good” not ever having to go there, ever again.

Seven months ago I really had no idea what leukemia was; other than a cancer of the blood. Today, I am much more educated in the disease, recognizing that there are many different “types” of leukemia and many different treatments. I have learned many medical terms and taken drugs that I have never even heard of. I have researched doctors, treatments and statistics. I have laughed and cried and even ranted at the stupidity of the luck of the draw of me getting leukemia, in the first place. I often ponder the “why” wondering just what lesson in life I am to learn, or teach, from this experience.

I am eternally grateful that I am the one with leukemia; as opposed to my children or grandchildren. I try not to dwell on the “what-ifs” and hang on to the “I cans.” I look at each day as a new opportunity and a gift. I pray that someday there will be a cure, not just for me, but for all that suffer from cancer. I know that this is a pipe dream, but ten short years ago, there was no treatment for my type of cancer; medical research is amazing.

Today, people with chronic myelogenous leukemia have hope. Time is on our side. Some of us will live years without ever needing a bone marrow transplant; others will develop life threatening side effects. Some will live and some will die. Some suffer greatly from the everyday side effects of our potent drugs; others seem to sail easily through their treatments. Living everyday with the knowledge that you will have cancer for the rest of your life is a sobering realization; it brings your mortality to the forefront and gives you the opportunity to live your best life. You can chose to be bitter, or your reality can become bitter sweet; it is up to you. 

When we are healthy, we all believe that we are immortal. We live our lives’ a bit more haphazardly and don’t ever consider that our life may end, or change at any given moment. We all have choices to make and since being diagnosed with leukemia, I re-examine my choices more often and with a finer tooth that I used to. I question my choices and hope that they are helping me to live my best life.

These past seven months have not been easy, but the love and support from my family and friends, and the new friendships that I have made, have made this journey so much richer. Without all of you, this journey would have been a much rougher road to travel; for this, I thank you all!

Wednesday, September 7, 2011

South Bay Dance Fling: Dancing, Despite Leukemia

For those of you that remember my last dance competition, things did not go very well. The event was in Portland, Oregon and we had flown there the night before the competition. I am not entirely sure what happened, but for whatever reason, I was totally wiped out and in a brain fog. I did compete and I survived, the only thing was that I really don’t remember much of it at all. I DO however remember my black dance panties! I have THAT on film.

The competition this past weekend was in San Jose, Ca. and it did not require a plane ride. It was a six hour drive, but I seemed to tolerate it much better than being in the air. That, coupled with the fact that I did not dance until noon, bode much better for my overall well-being.

In some regards I felt that I danced better than I did in Portland and in others not so much. The not so much was directly related to my making some pretty major changes in the way I actually dance, due to my muscles, tendons and joints finally healing, after being poisoned by Cipro for the past 15 months. Ironically, my muscle, joint and tendon pain seemed to dramatically improve after my chemotherapy. Maybe the Sprycel is helping to keep it at bay; who knows?

Since I do get a one day per week reprieve from Sprycel, I chose to forgo my daily dose the night before I competed. I definitely had a bit more energy and was much more clear-headed at this competition than I was at the last one. I once again came in 2nd Overall, but my individual scores were much improved; and that for me is a win! I still have a ton of things to work on and we got a brand new Cha Cha routine while we were there, so I hope that my brain and body will decide to start co-operating on a more regular basis.

I AM going to dance my way through this damned leukemia!

The first dance was the judges favorite, the second one was mine!

Tuesday, September 6, 2011

Biopsy Test Results: Number Two

The results are in: My PCR is 2.15 x 10-3. According to my doctor, it is almost half of what it was two months ago at 4.47 X 10-3. He says that I have jumped the most important hurdle of Complete Cytogenetic Response and that we will be “refining” our approach during my next visit.
Fortunately, he will now be able to monitor my PCR through blood tests, as opposed to bone marrow biopsies. That is, as long as there is a continual decrease and no increase in my BCR-ABL. I am very happy to receive that news.

Prior to my biopsy results he had decided to reduce my Sprycel intake by one dose per week. That means that I am taking 100 mg of Sprycel six days a week. He was waiting on the results to see if we could lower it to five days a week, but I didn’t quite reach THAT goal…..darn it. I believe that he is giving me one day off per week due to the cough that I have developed while taking Sprycel (Dasatinib). One of the more serious side effects of Sprycel is pleural effusion . Pleural effusions are basically defined as fluid around the lungs. This of course can lead to a whole host of serious complications, nothing I plan on dealing with. Hopefully this small reprieve will keep me and my lungs from entering into the danger zone.

More troublesome than the cough these days are the mouth sores. By the time the current ones go away, another two or three appear. I am in awe of just how painful they are, I have had fever blisters and other canker sores in my mouth before, but nothing like these. The good news is that maybe I will finally lose those five extra pounds that I have managed to gain since it is so difficult to eat!

As far as my Sprycel vacation day goes, I am thinking that I will choose the day based upon when my dance competitions are. That would mean that they will most likely fall on a Thursday or Friday. Hopefully my body will adjust quickly to the respite and I will have a tad more energy and be a bit clearer in the head for my dance competitions. This weekend will be my first trial run as we are competing on Friday at the South Bay Dance Fling.

Praise God for my good results and thanks to all of you for your continued prayers and words of encouragement.

Thursday, September 1, 2011

Good Bye, Elvis

One thing that I know for sure is that life is never stagnant. It is constantly changing; sometimes in a good way and sometimes not. On Sunday, I decided to go to Palm Desert to visit my family. It was a really difficult choice for me to make because of the neighbor’s dog, Elvis. He and I had become friends over the course of the past few months, and he had a sore on his ear that was being attacked by flies. I was the only one that was treating it, in any way and if I did not put ointment on his ear four times a day, I was afraid that the flies would lay eggs under his skin and that they would hatch. No need for a visual here, but if that were to happen, it would be disgusting!! So, I was a bit reluctant to go, but told myself, that he wasn't my dog and I was being ridiculous; I had a strange feeling that I would never see Elvis again.

I was gone for three days. Tuesday morning Joe asked me if the dog had ever been gone in the morning when I went out to see him.  I told him no, and knew that my gut feeling was right; Elvis would be gone when I got home. After my anxious drive home, I reluctantly grabbed a dog bone and headed for the back yard; already knowing what I would find. My premonition and gut were correct. The dog was gone. No dog, no chain and no bowls. One on hand I was extremely sad; on the other I was relieved. My relief comes from the fact that I no longer have to be a witness to the neglect of a very good dog.

In my own little corner, in my own little chair………I can be whatever I want to be; yes in my own perfect little world, in my own head, Elvis has a new family. He is unchained and able to run and play; he is being loved and well taken care of. Of course, I have not seen the neighbors since he disappeared, so I have been unable to ask them where he is. Maybe it is better that way. I really do not want to burst my own bubble. Speaking of “bubbles,” I am relatively certain that Elvis been replaced by a small yapping dog named Bubbles.  If Bubbles knows what is good for him/her, he/she will not grow very large; maybe that way he/she can avoid the chain.

I suppose that I will just have to live with the fact that hopefully I made some of Elvis’s days brighter. Good-Bye, Elvis; I wish you a happy life.

Bricks for the Brave!!